I’m sure that like you, when I first heard the name Rett, I guessed it might be a
sickness but after that I knew nothing about it. However I was introduced to this
condition by Declan and Marie McPhillips from Scotstown, whose young daughter, Shauna,
suffers from Rett Syndrome, and I was appalled by their story.
Rett Syndrome is a neurodevelopmental disorder affecting mainly girls and results
in severe and multiple disabilities. It is usually characterised by a period of normal
development followed by a phase of regression at approximately 15 months of age where
many skills , such as the ability to walk, speech, and hand function are lost. However
it is not a degenerative disorder and these beautiful girls are capable of life long
learning and benefit greatly from therapeutic and social activities.
The Rett Association of Ireland was set up by the parents of children suffering from
Rett Syndrome. Its aim is to support families and to raise awareness, among the public,
of this condition and to assist the medical, theraphy and teaching professionals,
who work with the girls. The Association organises Conferences and bring International
experts to speak to the parents and professionals. They also organise neurological
assessments to help in the medical management of the condition.
Rett Syndrome is fairly rare as there are about 55 diagnosed cases in Ireland at
the moment though it is thought that there are others who have not been diagnosed
yet. The most serious aspect of all this is that the Government, the HSE, Social
Welfare, and authorities in general seem to ignore the needs of these girls and their
families. The girls require 24/7 care and attention and can have serious side-effects
at times. This puts a massive strain on parents and siblings and makes family life
very very difficult at times. The assistance forth-coming from the authorities it
totally inadequate and is insufficient to cope with the situation never mind provide
the help that can be of benefit to the girls.
To help provide neuroassessment for the girls Declan and Marie, with the help of
friends, raised over €13,000 and presented it to the Rett Association. Paraic Duffy,
Director General of the GAA and International Rugby star, Tommy Bowe agreed to act
as patrons and presented the money at a special function in Croke Park recently.
But this is only a beginning - doctors, Government and the HSE must realise the seriousness
of Rett Syndrome and take heed of the needs of the families who find themselves in
this position. They say that a nation can be judged by the way it looks after its
children and its sick and, if this is so, then Ireland will certainly fall far short
because the families of Rett Syndrome children and the children themselves seem to
have been totally abandoned by Government. If you can help to raise awareness and
assist in the efforts to get the authorities to help, then you will have done a great
deed.
On Right: Paraic Duffy, Director General GAA, and Tommy Bowe, Rugby International
player, hand over funds to The Rett Syndrome Association of Ireland. In picture are:
Alan and Alex Connolly, Bray; Damien and Shauna McPhillips, Monaghan; Paraic Duffy,
Tommy Bowe, Kevin and Ciara Barry, Dungarvan; and John and Rachel Duff, Wicklow.
